Friday, October 28, 2011

Managing a Herx Reaction

Well, it's a real kick in the pants when you are struggling with a disabling illness and then its treatment makes you even sicker, but that's what many people with Lyme disease have to deal with, as well as some people with ME/CFS being treated with anti-virals. It's called a Herx reaction, and, as we have seen recently with our son, it can be completely incapacitating.

What exactly is a Herx reaction? Well, for starters, the word "Herx" is a shortened nickname. Here's one of the clearest explanations I found on Lyme Disease Blog:

The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory
response to antibiotic treatment for certain diseases (although some
non-antibiotic treatments can produce the reaction). It’s also referred
to as a “healing crisis” or “die-off,” meaning a detoxification of dead
or dying bacteria and other pathogenic organisms in the body.

....A person with one of the Herx-causing infections has a certain number
of tiny foreign organisms in their body. The number of infectious
organisms can be in the thousands or millions. Each individual organism
is made up of its own cell with its own internal structure and contents.
If that cell dies through an attack by the immune system or an
antibiotic drug, it bursts open and releases its contents. Millions of
cells bursting at the same time introduces a significant amount of
cellular material in the body. These spilled contents cause the
Herxheimr reaction, When the spilled contents are cleared from the body,
the reaction stops.

Historically, the theory has been that the reaction is caused by
dying organisms releasing endotoxins. Recent experimental research
suggests that the rapid and massive overstimulation of the patient’s
immune system causes the symptoms. The immune system’s job is to
recognize and attack foreign antigens in the body. When dead organisms
spill their internal contents, a huge number of foreign antigens become
present all at once. The body reacts by releasing immune system
modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor
necrosis factor, among others). These cytokines are what cause the
fever, chills, and low blood pressure. Either way, the body gets
assaulted and fights back.

As the blog post explains further along, the phenomenon was named with respect to syphilis treatment. You may or may not know that syphilis has a lot of similarities to Lyme disease; both are caused by a type of bacteria called spirochetes which can be very difficult to get rid of and tend to leave the blood stream and settle into joints and tissues. Given the explanation above and the immune system's role in a Herx reaction, it makes sense that some people with ME/CFS being treated for viral or retroviral infections also experience Herx reactions; as is typical, our immune systems over-react.

Unfortunately, we have had to become experts in Herx reactions because our 17-year old son, Jamie, is going through such a rough time right now. Treating babesia and bartonella (two other tick-borne infections that Jamie has as well as Lyme) can also cause Herx reactions, and the immune dysfunction just makes it all that much worse. That blog post I quoted from above says that Herx reactions can last days or sometimes as much as two weeks, but Jamie - and many others with both CFS and Lyme - has experienced a severe worsening of symptoms that has already lasted many months.

He has been so totally disabled by Herx reactions that we have become desperate to find some way to help him, so I've done a lot of research and have talked to a lot of people. Here is a list of some remedies that I've heard about to lessen Herx reactions, from our doctor, various articles, and other people:

Milk thistle (Jamie already took it, but I've increased the dose; it helps the liver to work more effectively, filtering out toxins; it's essential for anyone who takes a lot of supplements and/or medications)

Extra soluble fiber

Hot water and lemon juice (I just recently read this; we haven't tried it yet).

Epsom salt baths (though people with CFS have to be careful that the bath isn't too warm)

Heat treatments, like sauna and hot tubs - THESE SHOULD BE AVOIDED BY ANYONE WHO HAS ME/CFS BECAUSE THE HEAT CAN MAKE OI MUCH WORSE, MAKING YOU VERY SICK.

None of these things helped Jamie very much (some, like Chlorella, we've just added). No matter what we did, he was still completely incapacitated while on antibiotics. Lyme experts say that there is no benefit to just enduring a severe Herx reaction; in fact, if your body can not clear the toxins, then you aren't making any progress against the illness. With this in mind, I had yet another phone consultation with Jamie's Lyme doctor this week, and we decided on a new plan. Even at a very small dose, Jamie was still severely ill, so we have decided to go VERY slowly and gradually with the antibiotics. The one he is currently trying is doxycycline, so he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and now he is taking just 1 pill (100 mg) every 3 days. Once he seems to tolerate that fairly well, we will increase it to one pill every two days, and so on.

So far, this seems to be working. He was able to go to school every day this week, though he is still very low in energy. He's been coming home at 3 pm each day, completely exhausted, unable to do any homework at all. Believe me, this is a huge improvement over where he was!

I'll let you know how it goes, but I thought I'd share our experiences and learnings with you because I know others are struggling with these same issues, either with Lyme or with anti-viral treatment for ME/CFS. I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.

13 comments:

Hi SueI am sorry that Jamie is one of the many who suffer so much from herxing. Ijust heard today on the ILADS conference in Toronto that one of the reasons the pain gets bad with herxing is due to the insulation surrounding nerves is damaged or gone due to the bacteria itself...so toxins causes more pain. This was not an anser for me today as far as helping with my own pain, but was helpful to hear an explanation. Joel gets less pain with die off and more exhaustion. I really hope the tiny doses reduces the herxing for him. I know that for me the pain can be dibilitating. As far as the herxing, I have shared with you what I know...which is not very helpful for you due to Jamie also having CFIDS. Joel as that too but does not have OI so can be in the infared sauna without issues. Of course drinking tons of water is necessary....and I belive the hot water and lemon is for getting the body in an alkaline state, reducing the acidity in the body. I know many who drink lemon water all day. i cannot tolerate lemons, myself so don't know if it would work. I also used something called Tri-salts when I was herxing so bad in June and July which also causes the brain/body to be in an alkaline state. Will be keeping Jamie in prayer.

If you are trying to produce an alkaline state then try a detox bath with baking soda instead of the epsom salts. The magnesium and sulfer in epsom salts are absorbed by the body so I'm not sure how good it is as a detoxifier (removal of material from the body through the skin). I've been using baking soda baths in the hottest water I could tolerate so that I was inducing a sweat. Yes, I was light headed afterwards but I felt slightly better.

I've also been drinking bentonite clay and activated charcoal but check with your doc on the timing of this stuff with the meds. They can bind with meds, supplements, etc. That being said I found them very useful for reducing nausea from the herx from the glutathione IVs. BTW, clay is an alkalizing agent.

I found this article interesting but with no references it is hard to tell the source/validity of the information.http://www.yolkskefirandgristle.com/2011/10/03/detox-baths/

Hello Baffled - Did you happen to keep a digital copy of those articles on detox baths? The links and entire site seems to be offline. My client is in dire need as she goes through her Herx after starting methylfolate. Got great liver support - but baths are a critical pathway for elimination; would love to see what others are doing. Best, Blythe at CommunityHerbalist.com

Blythe - I passed your question onto Baffled (a friend of mine). Just be cautious using baths for someone with CFS because of OI - have to make sure the water is no hotter than body temp or it can trigger even worse symptoms.

Thank you both very much for the suggestions. I'd never heard this thing about making the body alkaline before - do either of you know of any resources online that I could read? I will check my usual Lyme sources today.

And I'm confused how lemon juice could make your body more alkaline because lemon juice is an acid...though I have heard this advice before.

baffled - I don't know if I'd chance the hot bath with Jamie - he gets REALLY sick in hot water - went in a hot tub at a middle school pool party once and we had to go pick him up.

I know it must be overwhelming dealing with one thing after enough Sue but, amidst that, you have worked out what sounds a very rational plan. Glad Jamie's managing to function a little again and hope it all goes well.

Hi im following the new and very promising results of using a lymphcancer med. in Norway for CFS (im from Sweden). They got some funding from a foundation for finding a biological trace for CFS. So if we are lucky we may finally find some proof on CFS existence as a physicall illness.

It sounds like a promising lead for treatment, but we don't need that study to prove CFS exists - there are plenty of scientific studies that have already done that - the problem is that there are still so many doctors who don't keep up with the latest research and still have outdated ideas about CFS.

Dr. Nancy Klimas wrote an excellent paper a couple of years ago, detailing all the studies that show biological abnormalities in CFS, especially in the immune and endocrine systems. If you want to see it, just e-mail me (click on my profile and use the E-mail button).

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.